Prospective Pan-European Study of ALS Using an Integrated Patient Data Platform (PRECISION-ALS)
Project Description: This project involves the prospective collection of detailed and harmonised data from people with ALS for inclusion and analysis on a single searchable database.
Project Objective: The primary objective of this proposal is the harmonisation, collection, collation, and detailed interrogation of prospective multimodal longitudinal data on ALS patients from TRICALS members into a single searchable database. This will enable the utilisation of an existing network of experienced sites to interrogate the heterogeneity of ALS and to characterise disease course in a large number of ALS patients.
Project Status: Ongoing since 2023. Prospective data collection is ongoing across the Precision ALS sites. New sites are facilitated to join the data collection effort as they join the Precision ALS Consortium. The plan is to continue this prospective collection as long as sustainable beyond the life of the original Precision ALS Research Programme and to integrate these data with the extant data used in the ‘retrospective study’ described above, to create a large and growing dataset of detailed clinical data on people with ALS in Europe. The larger and more complete a dataset we can achieve in this regard will better enable us to characterise the ALS disease course and describe the heterogeneity of ALS. It is expected that these data can be utilised in future targeted projects both in collaboration with industry and with Precision ALS researchers from one or more sites with a particular research question of interest.
